Author Topic: New rheummy says NO naltrexone  (Read 265 times)

trc1962

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New rheummy says NO naltrexone
« on: June 23, 2020, 01:32:28 PM »
Hi to all. I always come back here for wisdom and guidance because I get good suggestions! I suppose we who have autoimmune issues understand how it feels to live with it more than a person without it. I had the most incredible rheummy for 7 years, just the best! Because he is so good, he was offered a job at his dream hospital in Loma Linda California and he left in March. I was devastated. He had started me on low dose naltrexone a year and a half ago for body pain and for me it was a godsend. I was assigned a new rheummy that was brought in to handle the case load and when I needed a refill on naltrexone he said he doesn't believe in it and won't prescribe it. I don't know what to do as I am limited with rheumatologiss in the area. I am a p.e. teacher and I have to move and I can't without the naltrexone, any ideas?

eye2dry

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Re: New rheummy says NO naltrexone
« Reply #1 on: June 23, 2020, 04:49:24 PM »
Hi there.

I asked my rheumy about it last year and he said..." no , we're not going to start that ".
Basically, He said no trying to cover up the pain, get on biologics to treat my RA and sjogrens.

Shelly
medications: synthroid- Cymbalta- plaquenil- lots of supplements

***Lord help me to be the person my dog thinks I am***

Cindy

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Re: New rheummy says NO naltrexone
« Reply #2 on: June 23, 2020, 06:05:17 PM »
My rheumatologist doesn’t believe it in it either. I get mine from a functional doctor.

jazzlover

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Re: New rheummy says NO naltrexone
« Reply #3 on: June 23, 2020, 08:29:50 PM »
Find a doctor who WILL take care of it for you. They are out there. I feel sorry for you to have to go without it. It's not a pain med, but it helps auto-immune .. so what is the problem??

Mainstream medicine is so UNHELPFUL sometimes!!
Mast Cell Activation Syndrome (MCAS), Salicylate Sensitivity,  Interstitial Cystitis,  gluten intolerance, Raynaud's, Sjogren's, A-fib; cytomegalovirus, recovered from Lyme disease

meirish

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Re: New rheummy says NO naltrexone
« Reply #4 on: June 24, 2020, 07:27:01 AM »
jazzlover has the right idea. I did some research on this drug some time back and I noticed that many doctors have not jumped on the wagon for it. You may have to ask your primary for a referral to someone who works with this drug. Good luck. Irish

trc1962

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Re: New rheummy says NO naltrexone
« Reply #5 on: June 24, 2020, 11:39:27 AM »
The rheummy who left said that nobody jumps on the band wagon about it because there is not a large amount of money to be made by big pharma. It really helped me. My mom has severe RA and she had to ask a lot but finally got a prescription and is feeling better too. I am on mycophenolate sodium and it does something, but not too much. Imuran was a miracle drug for me, but after 8 years it stressed my liver and I developed jaundice. Because of the liver issue I try to stay away from ibuprofen and tyelenol and the naltrexone allowed that. I am going to find someone who will prescribe it. I trusted  my rheummy very much, he is a young guy and was really on top of things...hence he is now a top doctor at Loma Linda MC, his gain, but our loss here in Spokane. It helps, it has no side effects and doesn't effect my liver enzymes all of that is good. Thank you for your comments.

SunshineDaydream

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Re: New rheummy says NO naltrexone
« Reply #6 on: June 24, 2020, 05:09:15 PM »
Bummer. Have you tried plaquenil?
Sjogren's, lupus, OAB and osteopenia
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Carolina

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Re: New rheummy says NO naltrexone
« Reply #7 on: June 25, 2020, 05:03:58 AM »
I get my naltrexone (3mg capsule 3x day) from a Duke pain specialist at Duke's Innovative  Pain Therapies Center.  It takes a very special doctor to get naltrexone for pain.  It has to be specially formulated and is NOT covered by my RX insurance.  It costs about $60/month.

Good luck!

Regards, Elaine

Female-Elaine,78-CVID-pSJS-IC-PN-CAD-Osteoarthritis-COPD-SFN-Knee/Shoulder Degeneration-SIBO-Intertrigo-Act.Purpura-Raynaud's-Meniere's-Hiatal Hernia-Achalasia-IVIG Gamunex-Medrol-Gabapentin-Atenolol-Pilocarpine-LDN-Nasonex-Lipitor-Estrogel-D-Mannose-NAC-Co-Q10-D3-Omega 3-Naltrexone-Omeprazole-

Cindy

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Re: New rheummy says NO naltrexone
« Reply #8 on: June 25, 2020, 12:22:22 PM »
I’m not familiar with how strong medicines work so this may sound dumb to ask. Now that your liver is heal, is there a possibility they can try Imuran again? Or once if affects a body, a person can’t try it again?

meirish

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Re: New rheummy says NO naltrexone
« Reply #9 on: June 25, 2020, 03:12:06 PM »
It seems to follow that once someone has hard liver issues from a medication that it is time to stay away from the drug causing the issue.

There are times that a doctor may do a trial of the drug again to see if the patients liver can tolerate it. Imuran sort of has the propensity to affect the liver that is why they do frequent liver blood work all the time one takes it. Sometimes we have to be thankful for the ability to take a med for a limited amount of time and then go on to another medication.

The good thing is there are a lot more medications we can choose from than 20 years ago. I was diagnosed with Sjogrens in 2003 and subsequently 4 more autoimmune diseases and it is amazing how many new meds are out there. I am of the opinion that docs may have problem keeping up with the new meds and how they work because of the number almost overwhelms them. That is pretty much why one needs to see an immunologist when it comes to being prescribed drugs to help us. The doctors have to actively pursue other physicians and organizations who can help them keep updated.  Good luck. Meirish

jazzlover

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Re: New rheummy says NO naltrexone
« Reply #10 on: June 26, 2020, 09:16:43 AM »
trc .. Exactly right about Big Pharma. Some doctors won't stray from what they are taught in medical school.

My primary care doctor is the one who takes care of it for me. He didn't know a lot about it, but he was willing.

I buy it from a pharmacy in Colorado and it is shipped to me. It's a very reasonable cost since I am truly on a low dosage.

Best of luck to you! You might try finding a Facebook group on LDN  and asking them where to find a doctor in your area who will prescribe it.
Mast Cell Activation Syndrome (MCAS), Salicylate Sensitivity,  Interstitial Cystitis,  gluten intolerance, Raynaud's, Sjogren's, A-fib; cytomegalovirus, recovered from Lyme disease

trc1962

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Re: New rheummy says NO naltrexone
« Reply #11 on: June 26, 2020, 08:11:00 PM »
I can't take plaquenil as it made my scalp hurt like psoriasis and lots of hair fell out  in a few days. Imuran is out - I have even asked (yes I was desperate) but it is too risky and I wouldn't want to suffer liver issues. I get my naltrexone from a compounding pharmacy here in Spokane, but I need a prescription to do that. There are a couple of pain clinics in town and some functional docs, so I will keep exploring. I should add that I did a round of rituxan and it helped the autoimmune, but made me have terrible seb derm and greasy hair, I suppose from all the steroids they have to give you. Irish what other Autoimmune disorders do you have if you don't mind me asking?

meirish

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Re: New rheummy says NO naltrexone
« Reply #12 on: June 26, 2020, 09:29:04 PM »
I have had symptoms of autoimmune since 1884 and in 2002 diagnosed with Bullous Pemphigoid (skin) and 2003 diagnosed with Sjogrens, 2006 diagnosed with MYashtenia gravis, Hashimotos and severely low T-cells, cause unknown but probably autoimmune. I was put on IVIG 80 grams once a month in Oct 2006 and am still on it. This is for my Myasthenia and it helped improve my t-cells and does help keep the skin tamed down. It does nothing for Sjogrens to my knowledge.

In 2016 I was diagnosed with autoimmune ear disease which causes deafness. I have been deaf in right ear since 1997 and slowly losing hearing in Left ear. Just got my first hearing aides last October. I am 77 years old and have no idea how low I can be helped by the hearing aides. One day at a time. I also have developed more conditions that are time consuming and troublesome. My Sjogrens has piddled along for years and is bad and better but never good or gone. It has been getting worse the past couple of years.

I was a registered nurse and worked until 2003 when I had to quite due to my health. I worked until I could hardly walk. I think it is good to work as long as a person can, but everyone is different. I worked and spent the off days resting so I could work. Hope all is well with you. Have a good weekend. Meirish

Carebear

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Re: New rheummy says NO naltrexone
« Reply #13 on: June 27, 2020, 10:13:30 AM »
Irish, I am chuckling about your statement that you have had symptoms since 1884. You sure look good for you age, girl!  Hehehe!
Sjogren's syndrome, RA,  Raynaud's phenomenon, Celiac Disease, Hashimoto's Thyroiditis, Grave's Disease, Fibromyalgia, Osteoarthritis, Osteopenia, Cervical Stenosis

Gabapentin, Methotrexate, Synthroid, Dexilant, Domperidone, Metronidazole, Pennsaid, folic acid.

meirish

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Re: New rheummy says NO naltrexone
« Reply #14 on: June 27, 2020, 05:00:32 PM »
I really think I should use spell check, don't ya think. lol Thanks Meirish